Random photo

XML Feeds

As much as I thrive on having a routine in my life in order to fit in everything that needs to get done on any given day (and maybe get to the things I just want to do…), I recognize that the “learning and inspiration from the simplest of sources” as I recently wrote about, is sometimes facilitated by stepping out of my routine for a time.

This past week for example, I spent a few days in Maine. I know November isn’t exactly prime time for tourism, as evidenced by the fact that many of the tourism-related services like the bike rental shops were closed for the season and that we narrowly missed a major storm the day before we arrived. But, if you don’t need to rent a bike and you don’t mind bundling up, there is beauty and inspiration to be found in so many places. In my case, walking along the wind-swept coastline, a blustery palette of blues and greys, and nothing but ocean as far as you can see, was a chilly but refreshing reminder that there is so much beyond my to-do list and whatever frustrations I might feel as I myopically move from task to task in my usual routine.

And surprisingly, beyond the reminder to look above and beyond my daily list, I was also unexpectedly reminded of my past. In a Scandinavian-themed store, I came across all sorts of products and items that spontaneously brought forward warm memories of a time decades ago. I was born in Sweden but have grown up proudly Canadian. Still, the memories brought forward by objects I hadn’t seen or thought about in years was a heart-warming reminder of the person I was before I became a mother, before I faced the challenges of figuring out how to help my daughter after a childhood stroke, and before my days were defined by the activities that make up my current routine.

In a way, these recent experiences reflect the perspective I am generally trying to bring to the broader discussion about the importance of hope and perseverance in the context of rehabilitation after a childhood stroke. The importance of looking beyond the diagnosis in the short term and maybe drawing on one’s experiences from the past to move forward. Even when she was a baby, I always believed that my daughter could be more than the sum total of the dark limitations placed on her by the first specialist we met. A decade and a half or so later, that had certainly proven to be the case. I continue to appreciate the learning and inspiration I find from the simplest of sources—both at home and away.

Years ago, if I heard the word “Botox” I immediately thought of speculation in the gossip magazines about whether or not a Hollywood star was suspected of having rejuvenated their appearance using Botox injections. Botox, (for those not as familiar with gossip magazines as I used to be), temporarily relaxes specific muscles for a period of three to four months, providing an opportunity during that time, to appear less wrinkly. However, as I’ve learned in the context of my daughter’s rehabilitation after a childhood stroke, Botox injections have a much wider application, such as addressing muscle tightness related to various conditions including the effects of strokes, even in children.

At the beginning of January, my daughter had the privilege of receiving such a treatment here in Montreal. Botox was injected into her arm and hand to try to relax those pesky muscles that despite all of our rehabilitation efforts over almost a decade and a half, remain so tight that they limit the use of her right hand. As is the case in the context of beauty treatments, in the context of physical rehabilitation, Botox temporarily relaxes specific muscles for a period of three to four months, providing an opportunity during that time to, not appear less wrinkly as in the glossy magazines, but to work really, really hard during that little window of opportunity to try to strengthen the opposing muscles enough so that hopefully, when the Botox wears off and the muscles that were injected go back to their usual state of tightness, greater mobility and dexterity remain.

This sounds easy and straightforward but in real life, or at least in my life, not so much. Since the Botox took effect, we’ve been getting up extra early every morning to do what we’ve been calling the “hand Olympics” because with the stress of any given work/school day for each of us, and the regular homework/activity schedule in the evenings, it’s the only way we can consistently fit in the effort required to make any progress at all. And, it does feel like we’ve been training for some kind of Olympic event only on a teeny-weeny micro level where heroic achievements are measured in micro-millimeters. Thankfully, we have seen progress. In the darkness of the early morning hours, we’ve been thrilled to see my daughter’s hand be increasingly responsive and see what is possible for her when the muscles aren’t working against her.

Now however, at about the three-month mark, we’re at the point where the Botox will start to wear off. Will any of the progress we’ve seen, remain once the Botox has worn off? Will we have anything to show for the many early morning hours we’ve put in somewhere between a quick breakfast and the start of another long day? I’m not sure. Still, I remain hopeful. Even if those pesky tight muscles are so stubborn that afterwards, the tightness from the stroke overrides the gains we’ve seen over the past three months, I will see beauty. Unlike the glossy magazine covers, I’ll of course have all the same wrinkles as I had in January, maybe even more because it’s been stressful to try to fit this in every day and try to remain patient (I need to refer back to my own book to remind myself about the challenges of staying patient in the context of physical rehabilitation...).

But, throughout this period of intense effort, with a daily opportunity to annoy each other before most people are even out of bed, we continue to do our best on a shared goal. Helping her as a teenager is certainly very different from the period of time I wrote about in my book, when she was a young child and everything could be turned into a game. But, we're still working together, we're still coming up with new ways of doing the exercises and we're still finding ways to make each other laugh.

I certainly hope that in the next few months my daughter will have the satisfaction of keeping at least some of the increased mobility she's working so hard to gain. Either way, she'll have a clear memory of what was possible which will surely be a powerful motivator and an important reference point for her future efforts. Along with the fact that even bleary-eyed, we're still cooperating and laughing together more often than we're not, this is the beauty in the Botox that I'm seeing right now.

Some things, I know for sure—or at least, I think I know for sure. I don't just think I like chocolate, I know for sure that I like chocolate. What's not to like? And, I know what I definitely don't like. I don't like rats. Just the thought of them gives me the shivers. But, is it possible that even though I like to believe that I am open-minded, that I have been too quick to judge—even the things I think I know for sure?

I certainly like to believe that I am open-minded. For example, even though I was told many times over many years that because of the stroke my daughter suffered as a baby, there were many things she’d never be able to do, I kept an open mind and worked hard to help her anyway. As a result, she has exceeded all expectations.

I came across a reference to a study that shows, strangely enough, that even though most of us think that rats are disgusting and only concerned with their own survival, they have actually proven to exhibit something that we associate with humans—compassion. In the study, a rat was restrained in a small cage while another rat was free to roam around his captive compatriot with a pile of chocolate chips nearby that only the free rat could access. What researchers found, was that rather than immediately starting to eat the chocolate, the free rats chose to persevere until they had found a way to liberate the captive rat, regardless of how long it took, all the while ignoring the chocolate.

So basically, as inherently unpleasant as I find rats to be, it would appear that even if they are given the opportunity to keep a big pile of chocolate to themselves, if one of their own is in distress nearby, they will choose to help their fellow rat before eating anything at all. That’s definitely not what I would have expected.

I still know, for sure, that I like chocolate and I'm still pretty sure that I'm always going to find rats unpleasant. But, maybe there is still scope to be more open-minded—even about the things that I think I know for sure.

Two years ago on a beach in Maine, I noticed a strange pattern on the rocks, like some sort of free-form labyrinth. Looking more closely, I saw it was actually winding trails made by tiny snails in a very thin layer of sand as they travelled along on the rocks. It made me think of that rhetorical question, “If a tree falls in a forest and no one is around to hear it, does it make a sound?” In this case, I thought…As we travel along on our life’s journey, even if we can’t see the trail we’re leaving behind us, does it mean there isn’t one?

I think as invisible as it may seem to us, we do, in different ways, leave a trail behind us as we travel along through our lives. For some, it’s a significant contribution, having an impact on a great number of people. For most of us though, our trails are much smaller, confined to little rocks somewhere on the edges of the beach. Still, all of our actions, both positive and negative, leave an impression on something or someone, even if we can’t visually see it. As members of a community, for example, we have an effect based on whatever involvement we choose to have. As parents, our choices and actions are later reflected in the attitudes and values our children carry forward. In my case, I like to believe that all of my efforts to rehabilitate my daughter after a childhood stroke have contributed to her having not just a greater physical capacity but also a stronger sense of self than she otherwise would have.

If we could look back and clearly see the patterns we are leaving behind us, would we be happy with what we saw? I hope that when I am the equivalent of an old, slow-moving snail, that I will look back and be content with what I have left behind. Micha Books is a part of that—an effort on my part to turn what was a very difficult period in my life into something that, hopefully, is helpful to others. This summer, I was very happy to be invited to talk about my book at an event organized by the Canadian Pediatric Stroke Support Association and another one at Marillac Place, an organization in Kitchener, Ontario that provides a safe home for young women who are pregnant or have a young child. There, rather than focussing on pediatric stroke, I talked more generally about the importance of persevering even when you find yourself facing an extremely difficult situation, and even (and especially...) when you find yourself facing these situations on your own. I very much appreciated the opportunity to meet these young women and I admire their extraordinary courage. And, I have great admiration for organizations such as Marillac Place that help young people when they need it the most and in this case, their young children who have barely just begun their lives.

We can't really see the trail we leave behind us, but doing and saying something positive along the way must surely be a good thing, even if we can’t see what the impact is.

One day, while walking in my neighbourhood, I saw a black dog from across the street. I couldn't help but notice how beautiful he was. His coat was shiny and he was happily wagging his tail back and forth. Still, something struck me as a little different but because I wasn't wearing my glasses, I thought it must just be that my eyes weren’t focusing as they should. But as I crossed the street and got closer, I realized it wasn't that I was having trouble focusing, it was that there was one less leg than usual to focus on—one of the dog's hind legs was missing.

At first I felt sad for him. But he didn't look sad at all and his tail continued wagging happily back and forth. It made me wonder, does he think of himself as disabled because he has one less leg than other dogs? When he goes to the park, do the other dogs treat him differently? Do they feel sorry for him or exclude him because he is different?

I know that one of my greatest challenges at the beginning of my daughter's rehabilitation was trying to help her understand that her right arm and hand, which mostly stayed curled up at her side, also had a purpose. Babies who have suffered a stroke are years away from learning to speak so you can't explain to them that their "other" limb can also be useful. They're busy being babies and as far as they're concerned, one arm is handy for doing things and one isn't. It's much later, as they become conscious of how they might be different from other people and have their differences pointed out, that they begin to see themselves as different.

Therefore, I would guess that the happy three-legged dog I saw just thinks he's a dog—not a disabled dog. And, when he goes to the park, the other dogs bark at him, chase and play with him without ever making him feel like he's different. He's a just a regular dog, same as the others.